Tuesday, 26 March 2013

Another positive difference in a week!

I had correctly guessed my bloods would have improved as 2 of the symptoms have improved and I felt my energy level increase. Shame you cannot prescribe weekends away with friends!
My kidney functions are all normal and my LFTs have shown improvement in 3 with the 4th moving by 1 point in the wrong direction.  My potassium level still dropping along with my HB.  During the most positive Oncology meeting I have had all year, the following plan has been agreed.
1. A referral to Liver specialist to understand why my Liver functions have deteriorate as the 2 largest tumours would not be the cause.  Liver being such a large organ should be able to cope with them.
2.  Stop all medicines for 2 weeks to see if there is even more improvement.  I have agreed to stop the Homeopathy and herbs and keep a foood diary!  We looked at the LFTs over the last 2 years and can see the deterioration started mid 2011.  Yes I had all the graphs with me and I will have a look and see what I was taking.
3. A referral to have the fluid that has collected in my belly drained.  This will improve mobility and appetite. Dr examined me and confirmed I have Ascities.  I just thought it was the left over fluid from being drip fed it me when I was in hospital.  I had stopped taking the water tablets last week as Dr called to say my potassium was low and  I know they impact the potassium levels.
4.  Review bloods in a fortnights time and if there is sufficient improvement in the Liver functions then I can start Capecetabin.  I may need another blood transfusion if the HB levels don't improve.

What a huge difference a different oncologist makes.  Thinking outside the box, being spoken to as a person not a number.  I was even asked how my daughter was coping with everything.  We discussed possible causes of the reduced liver functions and the last scan results.  What is involved with the Acities and what happens to get it drained.  It involves local anethestetic and a night in hospital.  Umm drugs that will impact my liver functions....
I am still angry at last weeks episode with Dr D&G and her advise has been contradicted today by someone who I know and trust from being my oncologist in 2009.

Heres to more Orange Juice, Fruit Teas and fun xx

Tuesday, 19 March 2013

An eventful afternoon in Clinic!!!

Arrived at the Beacon Centre had bloods taken and waited to be called in.  Thankfully time flew as Debbs was with me and before we knew we were all sat in the consultant room.  I was asked how I'd been and I told them my concerns.  Then the consultant, using last weeks blood test results, continued including giving me another less toxic chemo option.  I was then asked to come back in two weeks so that a treatment plan can be agreed and asked if I wanted a referral to our local hospice for symptom management.  This all based on a week old blood tests.  I confirmed I was not leaving without my test results which was discouraged but I stood my ground and went to the waiting room.   Then I realised I didn't know what to do as the Consultant and nurse would be seeing the next patient.  Bordering hysterical I called my GP and the duty Dr agreed to look out for them and ring me.  This gave me chance to calm down and by that time I had found out the results were in and asked reception to get a Dr to print them out.

Lynne arrived at this point and tried to establish what had happened.  The nurse then came out with the results and it painted a different picture to last weeks!!!!  Still out of range but improvement in 3 out of the 4 LFTs including the Bilirubin.  Lynne took charge and asked to continue talking to the nurse and got her to get us a room.  She then cleared up all the issues including a change in my consultant, brought the next appt forward by a week, I agreed to the hospice referral for symptom management.  Result.  Thanks Lynne I feel extremely lucky.  I feel much calmer now and it was certainly the right thing to do.  The consultation should have never taken place without the current blood tests.  Not that much has changed but it brought positivity to the table.

Feeling exhausted now and Alice is cooking me chili for dinner so signing off....

Wednesday, 13 March 2013

Am home at last

and resting. Just got to keep an eye on the fluid retention however it is lovely being home.  My hair is now all shaved off thank you Anne,  and the search for the hats and scarves back on.  Trust this to happen when it turns cold and I gave my beanie hats way. Never mind opportunity to buy more and it wont be needed for long.

Pre - assessment next Tuesday but till then rest and recovery and think about the questions I have for treatment options open to me. 

Holly on school trip til Friday so it is feet up with some exercise... uummm feel an online shop happening xxx

Monday, 11 March 2013

It gets better

Well catheter came out today and I went for a short walk afterwards to the cash point and Lesley P brought me back in the wheel chair but is was a good start thank you lovely!!!!
My creatinine levels have come down by another 20 points.  I am carrying fluid but have turned down the magic pills as I don't want this to affect my kidney function but will have to monitor it.  I hope to be discharged tomorrow with 7days of antibiotics as a small UTI infection is being checked out and I'm happy with that.  I also have to do something with my hair as it has fallen out again so I will have to grab the scarfs and hats out and hope to sport a spiky look before the Judi Dench look comes back :-)

Options for the next steps are being discussed and I have lots of options to explore and will post that when I have made them.  The good news for now is that recovery is good and going home tomorrow.

A huge thank you to everyone including Thandi.  As you know I have continued with plans as a well person but having plan b's as well.  This weekend Holly and I were going to Bournemouth to see Olly Murs at the Bournemouth International Centre and stay the weekend in a lovely 4 star hotel booked through Laterooms.  I have to say they have all been brilliant. With the bookings being the last thing on my mind except ensure the Olly Tickets went to a good home with as little fuss as possible.  The hotel phoned Friday to check what my arrival time was and I acknowledged they were my next call and apologised but would hope to transfer to another day but not in a position to discuss it at moment and explained what happened.  They sorted every thing out and got in touch with Laterooms who have confirmed today they are going to let me have my booking at another date to suit me without extra charge for the same hotel.  Wonderful news and I am so grateful for the stress took away from me by the hotel.  Big brownie points to both of them.  Then the BIC came up trumps as well.  My lovely friends Elaine and Tanita were both free and able to go to the concert and I was able to let them have the tickets and the BIC were very helpful and made this secure but a painless exercise.  I am so glad you both enjoyed the evening and the tickets went to a good home.  I'll get to see him at some point :-(
Thats all for now.  All good and going in the right direction.  Going home tomorrow with managable side effects and rest.  Thanks for everyones thoughts and wishes it all helps xxxx

Sunday, 10 March 2013

Fab test results are in which have made my day...

Restful night, nurse came in. And informed me of results and Shushhh.
LFTs -Bilirubin shot up to from to 34 to 127 now down to 80 need to get to 17.
Kidneys - just waiting for creatinine levels to return from down to 184 and need to be under 120.
Potassium and Magnesium bank in range.
CA 153 tumour markers are now down to 122.6 need to get to 34.
My WBC is now back in range too so no longer neutrophenic
Although i am loosing fluid at a better rate, catheter is staying to monitor my kidney functions in particular my creatinine level.
My leg swelling will improve with rest and better urination.
Overall Result - All good news, functions improving in the right direction, symptoms improving and relaxing will also help. Will be having another blood test shortly.  Just waiting for a vein to come out to play

Thank you everyone for your messages of support and good wishes. Apologies for no personal replies but as you can  imagine I have been inundated however it all helps.  Holly's care is all sorted for next week keeping up normality as much as possible which is what she wants.  I feel more informed therefore more in control.  We cannot talk about next options until  the kidneys are working properly which is what is being closely monitored. 
I am being moved to the Beacon centre this afternoon as I come under Oncology.  Nothing to do with the private party I had last night.....
Lots of love and best wishes to you with a huge thank you xxxx

Friday, 8 March 2013

A quick update for you

After Saturday and Sunday spent mostly on the sofa, in a lot of pain , attempt at work on Tuesday but leaving work early and the start of being sick on Wednesday phoned duty GP and the Beacon centre on Wednesday it was decided with dehydration and white blood count on Thursday it was deemed necessary to admit me to Hospital on Thursday.
I was hooked up to antibiotics and cayline straightaway further tests were completed. I was Neutropenic - low white blood count and dehydrated.  Tests I conformed I had no infection  but kept overnight for the other.  I am not passing out enough water water now either.

I am needed to stay in to rehydrate me and increase my white blood count and reduce the jaundice which accompanies all that.
There are other options to consider as well with the impact the chemo has had on me sand I will update my blog when I understand them as my liver functions, surprise surprise,have been impaired which will be prioritised and disscussed.

Plan B for Holly is in action. We have all had a bit of a shock. However I am in the right place and should be hear for about 5 days.

Thanks for all the good wishes but this is all for nowxxxx

Sunday, 3 March 2013

A big Whoop Whoop and another winge...

However the Whoop Whoop is fantastic!  This has made up for the 3 attempts to get canulated on Friday for my blood transfusion and that is my blood results from Monday before I started chemo, showed a good improvement in the the right direction and my LFTs and my Tumour Marker.  It is just my Bilirubin level hasn't changed which I need to reduce.  I didn't care, I was ecstatic as you can imagine as this has given me the confidence in the homeopathy drugs I have been prescribed and ones I have self prescribed.  Big Whoop Whoop!!!  Just need to bring down my Blirubin and have been shopping for Echinacea tea, beetroot juice and already using honey and lemon.  The problem I face is having enough time to drink it!!

The down side is the side effects of Monday's chemo has kicked in starting with mouth ulcers.  A quick scour of the intranet showed Coconut oil and Chamomile will help.  Appetite gone and reminds me of how I felt in 2009 when I had 8 cycles.  Have got in snacks for energy and more Complan.

The whoop whoop more then makes up for this (I am still trying to convince myself) as my confidence is booming particularly after the last 2 weeks..  I have put a call into the Penny Brhon centre to speak to a dietitian to see what else they can suggest to bring my Bilirubin levels down.  Answers on a post card please .....